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3/20/2012

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77 Comments

Kathy Brick

4/18/2012 05:11:49 am

Dr. Herbst,
I saw you in sept of last year. I live in Nebraska and have been having a very difficult time implementing your treatment suggestions as docs here are just unfamiliar with lipo-lymphedema. I would like more info on the RAD diet as described on Fat Disorders.Org. Can you point me in the right direction?
Thank you,
Kathy Brick

Karen Herbst link

6/21/2012 12:31:18 am

I provided more information on my website. Hope that helps.

Josh

1/10/2013 05:01:45 am

Dr. Herbst I have been trying to contact your office about setting up an appointment. I am from out of town and have seen two different doctors but have had no help. I just went thru my fourth surgery and am becoming scared on what to do. If I can not step up an appointment, I was wondering if I could see a specialist that you may know in Michigan. Anything will help. Thank you.

Kristi

12/5/2015 07:56:48 pm

Josh, I live in Michigan too and cannot seem to find any assistance. I was wondering if you ever found a doctor that can help with diagnosis and care? I'd appreciate any info. Hope you are well.

Sheryl Durham link

9/27/2016 07:00:15 pm

I have not seen this Dr., but found his name on another DD site. Kevin Hackshaw MD | Ohio State University Wexner Medical Center

Lisa Greenwood

5/8/2021 07:37:04 pm

Dr. Herbst,
I have over 1400 angiolipomas according to University of Michigan Dermatology. I am an athlete. I do not have a fat disorder. Lipid panel normal. These things grow in negative calorie state, grow in multiple days of fasting state. I have a diet as good as you write. They say I have Dercums. I work in Pharmacology. I doubt it. Studied all your work in detail. Cuz some of these things grow up to 3cm and then dissolve. I have blood clots throughout my skin. I need to see you. I have seen 32 doctors no one knows what this is. Blood work only thing remarkable is elevated tryptase. University of Michigan Allergy says I do not have MCS or mastocytosis. I am on equivalent to mastocytosis level of antihistamines now. Antihistamines take away the pain not pain meds.
Heavier growths is on ovulation and first two days of period.
Negative for TBSAB1.
I grew all of these in 4 months after picking up an antibiotic resistant form of strep.
No infections/disease found except H. Plyroi, cleared and confirmed by stomach biopsy.
I wonder if these things are autonomous like you write. That it’s a combo of angiolipoma/autoimmune/pten/men1 thing.
More Genetics pending.
It doesn’t matter cuz no one said they will prescribe what you recommend in your writings: imatinib
I think I have mast cell deregulation of the microvascular structure of my skin. You hit it w/a good PUVA session it stops for a few hours. I do not think xolair will be strong enough. And I agree w/u when the tumor load increases medicine like adderall will help the lymphatic system. I currently counter w/ 7-9 miles uphill and 2 sauna sessions a day.
They are on my neck, knuckles, bottom of my toes, head, face. No section of my body is spared. Biopsy’s twice to confirm that’s what they are.

Laraine Zady

5/18/2012 04:23:51 am

I am 55, female and have several lipomas that range from the size of a kiwi to a grapefruit size. I had 5 large painful ones removed last year that were all near my joints. I'm now developing a small one on the back of my neck and it is causing stiffness and pain in neck, shoulders and my head. Next week I plan to undergo, on the advice of my spine and arthritis doctors, Bariatric surgery. I am 100 pounds overweight with very heavy legs and arms. Small chest and waist. Has anyone heard of this helping?

Karen Herbst link

6/21/2012 12:33:37 am

Laraine Zady: I am wondering if you had bariatric surgery and how you are doing. Many people with Dercum's disease have had bariatric surgery with good weight loss but the lipomas stay behind and can continue to be painful.

Renee Adams

12/3/2020 02:28:18 pm

Dr Herbst

I am 46 years old and started rapidly gaining weight in 2013. I was never large before this. I was diagnosed with scleredema in 2016 and have gone through LOTS of treatment. In May I had gastric sleeve surgery lost 60 pounds and now all these lumps have appeared. I went to my Rhuematolgist today and was diagnosed with Dercum’s disease. Is there anyone on the East Coast that can treat this (help manage it). I need a Doctor. I’m from NC but have traveled for years to John’s Hopkins in MD for my other connective tissue disease. Anyone you can suggest??

Karen Herbst link

6/21/2012 12:34:08 am

Laraine Zady:

I am wondering if you had bariatric surgery and how you are doing. Many people with Dercum's disease have had bariatric surgery with good weight loss but the lipomas stay behind and can continue to be painful.

Heather Marie

9/24/2013 11:10:57 pm

My sister , who has Dercums , had bariatric surgery three years ago . Extremely successfull . It had definitely relieved some if the pain and she says the Dercums is now tolerable . I am hoping for the same . I have just been diagnosed with Dercums disease . There may be more than the two of us in the family with this ,

mary jane

3/23/2019 06:09:15 am

I want to share my experience on how I was
cured and free from DERCUMS/LIPEDEMA Disease . I was infected with DERCUMS disease
and all my hands and leg where swollen and I was living in pain. I went to
so many hospital but the doctor told me that there is no possible cure for
DERCUMS disease but I was giving so many drugs but they never work. I saw a
testimony on how Dr ABAKA herbal mixture has help In curing people from so
many disease and I decided to contact him if he could help and he told me
that he is going to help me get cured I believed him because I have read so
much about him. Finally I got his herbal medicine and I used it for just
one week and I was finally cured from DERCUMS/LIPEDEMA diseases and all my swollen
body was normal. Thanks to Dr ABAKA for restoring my health. If you are
suffering from any diseases of any kind you can reach out to him and he
will cure you permanently get in touch with him through his email
drabaka99@gmail.com or whatsapp +2348147054320. He also cure HPV, herpes,
diabetes, enterovirus, Zika virus, hanta virus, and any type of viruses.

Hope Suggs link

3/30/2019 09:12:58 pm

Have any of you had any injuries? Auto accident ect.

Debbie

3/31/2019 04:32:15 pm

Yes, and yourself?

Hope Suggs

4/2/2019 01:26:40 am

Yes, last APRIL and My body has gone crazy.
Were you able to prove the auto accident caused the outburst?
I have them all over my thighs and my lymph nodes in my groin have some kind of enlargement/maybe lipomas. Showed up on a ultrasound. Got to get a ct scan.🙄 mine are angiolipomas very painful.

Crystal

2/12/2020 08:46:22 am

Yes, in 2004 and less than a month later, my Dercums started.

Kathy methe

6/29/2021 03:44:13 pm

I was is a auto accident 1 year ago in may 2020. I have spiraled down with my lipedema since the accident with pain and decreased mobility. I recently started on LDN and i believe it starting to help. I'm currently taking 3mg. I took 1.5 mg for 1 week. This week im on 3 mg and after 7 days i will take 4.5 mg daily. But i can tell already that it is helping my pain and decreasing my inflammation. I've been able to cut my otc pain pills to daily rather than 3xdly. Im also taking several supplements including tumeric. I also developed lipomas in my legs after a d&c for hyperplasia brought my all the inflammation. It seems like since i started menopause its been never ending symptoms developing. Im now post menopause at age 66 and still cant aeem to get this lipedema under control.
I wish i could see Karen Herbst but i have been unable to locate her.

Karen Louise Herbst link

5/9/2021 09:21:50 am

Lisa: Please call 310-882-5454 to see me.

Karen Herbst

Xavier

8/25/2022 09:44:13 pm

Hey Lisa,

It’s I treating you notes h.polryi infection. After I came back from Syria, I started growing lipomas like crazy. I also contracted E. coli twice, who knows if I had h.polryi. I was healthy then they started growing like crazy!

Matt Scarrcok link

5/28/2012 08:18:27 pm

Thank you for the blog, I will surely have close look at it. Please continue with regular updates.

shayne owens

6/20/2012 04:22:26 pm

my name is shayne owens and am 28 years old, i had my first lipoma when i was 17 and when i was 21 i had around 8 of them that i had noticed, and was told they were just lipomas and harmless, over the last year they have begun growin more rapidly from my stomach to chest my arms and legs, I am an average size male, and these things are taking over my body. i have no insurance right now and am having a hard time getting any help from any doctor other than they are painless lipomas, yet they cause me discomfort and pain. Will you see me as a cash cient?

Karen Herbst link

6/21/2012 12:35:25 am

Shayne:

I do take cash patients. Please call 619-543-6303.

Mark adler

11/22/2020 05:03:19 am

Same situation here. 1st lump age 27. Painless and rapid accumulation of lipomas. Some chron’s symptoms, early ,(49) cardiac disease, joint pain, memory/organizational deterioration

Actually saw Herbst a year ago

She did a good exam, write-up for me.

Recommended Rx. She is retired now, but sent out a many state list of doctors you might see.

My provider sent me to “pain management” as she did not feel safe going up on my pain meds, as my pain has increased with the total of nearly 300 lumps!

My pain doctor, Mariam Hakeem, in Maryland, is amazing, and familiar with all types of chronic pain conditions

I under went a 3 treatment ketamine infusion- paid cash $3700. This resulted in a significant reduction in my joint pain, did not affect my lumps

Currently titrations pain meds up

Feel free to contact me and I will send you the doctors names that are in, near your state!

Renee

12/3/2020 02:31:09 pm

Please provide a list of doctors on the East Coast that can help if you know anyone

Angela Utschig

10/2/2022 05:12:18 pm

Please direct me to this state list I am in Wisconsin and need to see someone familiar with dercum's

Brandy Page

7/11/2012 07:07:42 am

Dr. Herbst,
I had my first lipoma removed in 2007. By 2009, I had noticed six more, that were extremely painful. Six months later, there were 20 more. In early 2010, I was diagnosed with DD type 2. I have steadily gotten worse over the last year. I now have over 300 lipomas, and possibly something called Intestinal Lipomatosis. I "somewhat" follow the RAD diet; I can only hold down one meal a day, I don't eat meat, but I do eat dairy, but only eat minimal processed foods, and I eat home grown vegetables. I also have CVID, so I don't eat at restaurants and have to be careful about what I eat, or I will get food poisoning.
But nothing seems to help. I find new lipomas almost everyday and am in extreme pain. I have lipomas from the top of my head and face, to the soles of my feet. I live in Texas, where the weather is wonky and humid and when it rains, I'm like a human barometer. I know when a storm is coming anywhere from a few hours to a day before it comes because I get excruciating pain in my lipomas that prevent me from functioning. The ones in my chest make me feel like I'm having a heart attack! Have you ever heard of the weather affecting the dercum's lipomas in such a way?
My doctors' are all working together to try to figure out a way to help me, but they have come to the end of their rope. I'm on disability, so I have no way to come to California to see you. Do you have any other natural suggestions, other than the RAD diet, that may help? I do a lot of research on herbs and essential oils, grasping at straws. I will try any suggestion you may give.
Thank you in advance.

Debbie

11/14/2016 06:23:53 pm

It sounds like Lyme's disease may be pathogenically related to DD as people with both diseases can have painful responses to natural and manmade EMF/EMR, ie. stormy weather, full/new moons, wireless and digital technology. We should pay attention to our surroundings when we go through a painful flare to see if there is this correlation. I believe it may be pathogens in our bodies that are reacting in response to EMF/EMR and creating the painful lumps.

Jamie Sanza

6/10/2021 02:09:30 am

This sounds exactly like me

Jo Baker

8/27/2012 02:02:23 am

Dr. Herbst,
I have within the last few months had multiple lipomas appear on my lower back. I have all the symptoms of DD and would like to find a health care provider in the state of Alabama. Please send any information that you can as I do not have any resources to travel.
Thank you!

Dawn Brickhouse

1/20/2017 02:46:59 pm

Jo, I also live in Alabama. Did you ever find a doctor to help you? In January 2015 a doc in Pell City diagnosed me, then I went to see Dr. H in July 2015. Any help locally would be appreciated.

Melanie Reber

9/8/2012 10:27:03 pm

Hello Dr. Herbst!

I have been batteling tick-borne diseases for many years now. Confirmed diagnoses of Lyme, Babesia, HME and Bartonella H. When my symptoms of Bart h. emerge, so do many painful lipomas. From what I have researched, it sounds very much like Dercums. My question to you is... have you linked Dercums to Bartonella H either in research or in patient histories???

Thank you so much for any replies.

My best,
Melanie

Donna

5/22/2015 11:38:34 pm

Melanie, I am also wondering the same thing. Bartonella symptoms sound very similar to Dercums. How to tell the difference?

Thanks. Donna

Paula Apicella RN

11/12/2012 03:06:08 am

Hello Dr. Herbst,
I live in Delaware and cannot find a doctor here who has even heard of this let alone treat me. My doctor prescribed vicoprofen, which does not help at all with the pain. As an ER nurse, I have had several lipomas cut out and removed, yet grow back even bigger. I can barely get up in the morning and move anymore ( I am 42 yrs old). Can you recommend a doctor in the Baltimore or Philadelphia area?
Thanks,
Paula Apicella RN

sheila gbade

3/1/2013 11:28:50 pm

If you find someone in Baltimore, please keep me in mind. I would love to connect with you and the physician as well. I am a CT Tech in DC. If I find a physician, I will definitely let you know.

Paula Apicella RN

9/24/2013 11:41:11 pm

Sheila, did you have any luck finding a doctor near Baltimore? I'm still looking and researching along with calling Baltimore and Philadelphia doctors but no luck as of yet!

Ron Michels RN

4/21/2013 05:50:48 am

Have u found anyone, I am near Baltimore, my md of 20yrs gave me the boot, "they shouldn't hurt"- ?!

Paula Apicella RN

9/24/2013 11:44:45 pm

Ron, my doctor had said the same thing, "you only have some lipomas, degenerative disc disease, a few bulging discs and you shouldn't be in as much pain as you claim". Whaaaaaatttt? Is he kidding me? I can't even move anymore! I must have hundreds of these so called lipomas that shouldn't hurt!!!
Email me @ RN_ER@hotmail.com

Dr. Susan B Spitzer PhD link

1/30/2017 04:41:42 am

I have a wonderful geneticist in Baltimore that diagnosed my Dercum's disease. Her name is Claire Francomano and her specialty is connective tissue disorders, which are related to Dercum's. Unfortunately, her wait list is 18 months, but she is well worth the wait.

Mark adler

11/22/2020 05:15:41 am

Paula, remarkable similarities!

I too was an ER nurse for 28 years, until my disability ruling due to Dercum’s!

1st lump at 27, colitis, early CAD, memory/executive function, joint pain issues!

I was lucky to fly to tuscon Arizona, and see world renowned Dr K Herbst ( now retired)

I lost track of counting at 250!

I have a great “pain specialist” in Columbia MD. I underwent 3 ketamine infusions, with much joint pain relief

Dr. Mariam Hameed. She is with Clearwater Pain Solutions. Her CV is remarkable. Careful with you hydrocodone, it can cause deafness

Teresa Crisman

11/29/2012 01:39:41 pm

I wondered if you have a biopsy kit for mailing back to you for diagnosis? I would appreciate any info. I am unable to find a doctor or travel to California. My NP highly suspects DD, as do I. My symptoms match many you list. I have no known family with this same cluster of symptoms, but did grow up on an oil lease in the panhandle of Texas with exposure to crude oil/chemicals. I highly suspect this exposure to be significant in my disease process.

Connie Ziesemer

12/15/2012 09:48:59 am

I am 62 and had been diagnosed with Fibromyalgia 22 years ago. I think I have Dercum's though with painful nodules the size of rice, peas and large size marbles in legs, bottom, stomach, under arms. Has anyone tried a cold lazer or infared sauna? Is there a site that tells about successful treatments - I will start the RAD diet and use all the suggestions on Dr Herbst treatment protocal for Lipedema, hoping this applies to Dercums. Any help would be great.

Deanelle Payne

2/4/2013 05:14:16 am

I strongly suspect that I have Dercum’s but am having difficulty finding a doctor who can diagnose and I cannot get in to you until July 1st. I’m still suffering major bodily changes, including losing 15 lbs in two months while I continue to get bigger and thicker with increased pain and developed lipomas just from getting blood drawn. It is as if a switch was thrown on in May after being on a high dose of synthroid for a couple of months. I was only recently informed that my hypothyroidism was caused by Hashimoto’s. I’ve had hypothyroidism for 19 years but went off of synthroid for a few years because it made me not feel good. Note that my fibromyalgia symptoms were much better off of synthroid and were significantly worse when I was back on synthroid . My Drs. convinced me to go back on it, but prescribed twice the dose that I used to be on. I wonder if a sudden flood of synthetic thyroid in someone with an autoimmune disease that attacks thyroid has caused this. Have you seen connections between hashimoto’s or other autoimmune diseases and Dercum’s and is an autoimmune response suspected as a cause? If so, have any of your patients tried low-dose naltrexone (LDN) to regulate their immune system response? If I can ever get diagnosed, I would be interested in discussing possibly trying LDN. My daughter had great success with her Crohn’s.

Karen Herbst link

2/4/2013 10:12:34 am

A Dermatologist should be able to diagnose you. It does seem in a good number of cases that the immune system is linked to Dercum's disease and we can diagnose this by examining the fat and lymphatics. I have had a few people try low dose naltrexone but have not really heard that it is effective. It may not hurt to try. I also like manual lymphatic drainage and other meds.

Deanelle Payne

2/4/2013 11:20:37 am

Any names of dermatologists in the midwest area that you are aware of who are familiar with RAD's and can diagnose? i contacted Dr. Hanke's office in Indianapolis (you mentioned his name in an article) and he said that he did not diagnose Dercum's. I'm in Illinois. I would still come to you to discuss treatment options. For peace of mind so I know that I'm not crazy and for work purposes, I would love to get a diagnosis asap. My newest... I woke up this morning with my lower armpits looking like a third of a softball sticking out. it just keeps progressing and the pain is getting worse, especially in my hips, wrists, and shoulders. I would appreciate any help pointing me in the right direction.

Paula Apicella RN

9/24/2013 11:48:37 pm

Dr. Herbst,
There are quite a few of us on the east coast near Philadelphia and Baltimore. Can you refer us to a few names in this area?
I'm so desperate, I was told I have fibromyalgia as well as degenerative disc disease, bulging discs, but can't get a Dercums diagnosis?

Paula Apicella RN

9/24/2013 11:48:49 pm

Paula Apicella RN

9/24/2013 11:49:14 pm

PaulaNewf

10/18/2013 02:41:53 am

My doctor says that a dermatologist only deals with the skin and these lumps are 'under the skin'. There's no doctor that specializes in 'lipomas' or bumps 'under the skin'. I've had several very painful lipomas removed over the past couple of years and the doctor says that I can only be diagnosed with 'lipomas', perhaps doctors haven't heard of Dercum's in Camada? The physican and the surgeon doesn't believe that the lipomas are painful, they think that I'm making it up.
I mostly see posts on people with Dercum's that live outside Canada. Is there anyone else in canada (Newfoundland) that has painful lipomas and can't get a diagnosis?

S millow

2/19/2013 11:11:19 pm

Please send any info on diagnosing and living with dercums! I'm too embarrassed because I feel I brought this disease on by myself by gaining so much weight!

Pamela Moseley

3/1/2013 11:01:30 pm

Dear Dr. Herbst,
I live in northern California, surprise no one here will acknowledge Dercums. I have had 2 on my right chest removed. Wish you could have biopsied them. I have been diagnosed with Thoracic Outlet Syndrome from the pain and numbness in my neck, back ans arm. I was on heparin injections but that seemed to make lypomas worse but helped with nerve pain. I am now on Trental, a blood thinner, and it really seems to help with the pain in both conditions. Dercums and TOS. The lypomas on my chest are coming back but seem slower since stopping heparin injections. info on tos heparin injections can be found on doctorellis.com. Can we clone you? Any idea of doctors in northern California? I live in Paradise. Hope this helps

Sheila Gbade

3/1/2013 11:21:49 pm

Hi Dr Herbst,

I did see my GP yesterday for the lipedema, IBS and other issues. He said he knew what it was, but is in doubt that I have it. Which makes me think that he might be confusing it with lymphedema instead.
My doctor is working me up for antibody screening, vitamin D deficiency, and asbestos exposure (long story). I have been taking my chia seeds, almond milk, and other supplements for over 9 months. My nails, hair, and cuticles have no change. I told him I don't think I have been absorbing the nutrients and vitamins. So I got a blood work up. Referral to GI doctor.
The pain I have been complaining about on my back is a lipoma growing. My question- Is that normal for people with Lipedema? Also, is there a picture library where someone is tracking our images?

sccamping

4/5/2013 02:47:17 am

Desperate for a Doctor in South Carolina

Stella Mercer

7/28/2014 05:36:18 am

Did you find a doc in SC ??
I'm currently looking in Rock Hill area.
Google : think about your troubles stella if you want the details..
Curious & hopeful for a response..

B. Conover

5/3/2013 09:39:38 pm

I am getting desperate to find a doctor who can help me. I have classic lipedema ( I think Stage III) and have been misdiagnosed for YEARS, told to "just lose weight", told that I was just not handling pain well, been dropped by a doctor because he couldn't help me, told to do things that made the problems much worse. I am now 62, in constant pain. Walking any small distance (like shopping) is so difficult, climbing stairs is close to impossible. I work full time and weekends, but am totally fatigued, having increased mobility & pain issues, and my quality of life is diminishing. I must conserve energy to just get through the day. I wrap my legs and use made-to-order compression farow wraps, but after use, my legs are so painful I can barely touch them or wear slacks. I had double knee replacement two years ago, have had and need surgery again for herniated discs and now the lipo is spreading to my arms. I am on Coumadin due to PFO in my heart and atrial fib. I need to find a doctor in the Philadelphia/New Jersey who can help, but not only is there no one covered by my medical insurance, but I’ve had to give most doctors copies of information I’ve gathered on Lipedema, just to try to get some help (they appear to just be guessing how to help!) I cannot afford to go outside my HMO network to find help and my HMO is completely unsympathetic. HELP!! I need some suggestions. I feel I am becoming more isolated and depressed.

L murphy

1/25/2015 10:40:10 am

Read your post. I am working with a doctor in wilmington delaware who has trained in lipedema wal surgery with dr. Stutz. He accepts insurance and is a vascular surgeon. If you join one of the private lippy fb groups, such as lipedema sisters usa or liposuction for lipedema, i will post when he is starting. He has scheduled his first lippy wal patient for next month.

B. Conover

1/26/2015 01:25:31 am

Thank you, L murphy, for the heads up. Unfortunately, I am still on an HMO who doesn't cover outside of NJ. I would like to learn more about this, tho. Since my initial post, I became a patient of Dr. Herbst and have traveled to AZ twice for care, (although not covered by insurance). She is wonderful and my primary is working with her suggestions. Please feel free to contact me at breathedeeeep@yahoo.com.

Joyce White

7/2/2013 10:26:45 pm

Hi Dr. Herbst,
I've not met you but we've had conversations in the past.
I lived in WA. but now live in Reno, NV. I have 2 questions for you.

1. Does Lipedema/Dercum's Disease have what could be referred to as "flares" It seems that I notice an increase in my leg size about every 5 years along with less strength and mobility. I was diagnosed around 2001. Was told I wouldn't be walking on my own within 5 years. It is 2013 and I use a cane or go-go scooter and I can still walk, much slower, with more pain in hip areas and less distance at a time. So does Dercum's have flares?

2. Does Dercum's affect iron levels at all? I've been anemic off and on most of my life. Oral iron isn't working. After extensive testing to find if there is a cause, they didn't find any. I've just started iron infusions (one every 2 weeks so far) and will know in about 2 weeks if it has helped. My red blood cells are smaller, weaker and few in number I've been told.

Last I wish there was something I could put on my scooter that said, this is Dercum's Disease .................I hate the looks from people and most look at you like if you would lose weight you could get out of that scooter. My assumption of course, but I think it's pretty accurate.
I've learned I'm more vain than I thought.
I was pretty "normal" until age 43.....then a total hysterectomy. Now I'm 60 and can completely understand how we can become more isolated and depressed. Even with support it's hard.
It's starting to effect more of my life and it makes me sad and lonely.

Melanie Early

10/4/2013 01:41:06 am

Hi,
I'm located in the Central Virginia area and am desperate to find out for sure whether or not it is actually Dercums that has been absolutely destroying my life over the past year and a half. And if so, how I can go about doing whatever it might be to try to get some sort of relief. I have been told by two Dermatologists now that I "probably" and "more than likely" have it. However, the first one (a large and
well known teaching hospital) who gave me the "probably", also said there was no way to find out for sure and nothing they could do to help me anyway if it is what I have - and that I just needed to see a Pain Dr about it. However, I am already with a pain clinic for RA, Fibromyalgia and spine issues and they can't help me out with anything else if I don't have an actual DX. The next Dermatologist also thought it seemed to be Dercums, but left it that she would need to do more research first, so doesn't have a follow up scheduled with me until March of next year. I'm in complete misery and don't feel I can hang on until then - so I've started researching on my own to try to determine if I do actually even fit the criteria in the meantime. What has prompted my comment here now, is this question (that I havent been able to find an answer to) regarding Dercums having
FLARES or not? Whatever I have going on with me, while getting progressively worse overall, definitely seems to have flares and
"semi-remissions" of a sort - similar to the way my RA works. And the lumps and swellings move around and/or or come and go in the same spots - though there are a some deeper (and hardly visible but very painful and constricting ones) that seem here to stay. Also, during "flares" it will even affect my scalp, face, feet and hands and I sometimes gets redness or bruising as well (especially as a lump or swelling starts to recede) which one of the Drs said is NOT consistent with Dercums - although I've seen other information that would contradict that.... So, as you can see, I'm completely lost and confused here, which is why I am absolutely desperate for some real help and guidance! Please - ANY input appreciated!

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Shannon S

4/26/2016 10:29:11 pm

It pains me terribly to read through these comments and see the stories of suffering, from lack of insurance to uninformed medical professionals and the overall frustration from not getting adequate care. I am glad that there are persons such as Dr. Herbst who do care and want to make a difference in the lives of persons with disorders that so many have NEVER heard of! It inspires me to attend medical school so that I can help persons in this situation. Maybe I am an idealist, but as a person living with peripheral lipedema (still undiagnosed), chronic pain, digestive issues and depression, I know how uncomfortable it feels, how the despair can overtake ones life. I am at a point where I would almost trade bologna sandwiches in exchange for offering services if I was a physician (and yes, I know I am a bit crazy ;-) )

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Steve Tinsman

9/26/2016 06:57:26 am

Dr. Hearbst you dx my wife Tammi with dercums type 1 and type 2 five years ago. Tammi had obviously become much worse since your dx. My question is what are the symptoms of patients at the end of what seems to be the end. She has severe pressure on right side of chest, lower stomach area and back. She is eating less and in bed most of the time. Severe leg jerks and cramps. Thx Steve. I am trying to figure out a way to afford to take her to you for an appointment.

Errica M.

1/4/2017 01:42:24 am

Dr. Herbst,
I am a 27 year old female that has not been diagnoses, but I strongly suspect I have Dercum's Disease. My mother was diagnosed by you in 2014 and I share all of the symptoms she experiences and more! She is a nurse practitioner and also agrees I have the disease. After having 2 surgeries, one month apart, for the removal of ovarian cysts/ovary/fallian tube, I began to notice increasing pain due to rapidly-developing lipomas. The pain ranges from 5 on a good day to 9 on a bad day. NSAIDs and Opioids barely take the edge off. In addition to the pain, I also have loss of coordination, vertigo, headaches, severe muscle weakness in my right arm and leg, extreme pain on the right side of my chest/ribs, myoclonus in all extremeties, burning and smarting sensations in all extremeties, numbness, fluid overload to the point I struggle to breath at times, as well as pelvic pain. I have been to 3 different doctors, all of whom believe the symptoms are psychosomatic. They continue to blame the pain on anxiety/depression, and won't work with me to get referrals to a specialist. I am a newly graduated registered nurse and have lost my job due to being unable to fulfill my essential job functions. This disease is affecting my life physically, emotionally, and financially, yet these doctors don't seem concerned. My mom is coming to see you for her yearly follow-up appointment in April. Is there any way that I could be seen then, too? I know you aren't taking new patients, but I figured I should at least try! If not, can you recommend any Physicians on the East coast? I live in Maine and saw that there are a few doctors listed in Boston that specialize in fat disorders, as well as a rheumatologist in Vermont.

Thank you, in advance. I just need hope and direction.
Erica M.

Lind

3/1/2017 05:30:00 pm

Hi Erica,

I am suffering too, I live in Vermont. I did receive diagnosis by going through hoops and seeing doctors who really have no idea, or inclination to have any idea, what they are talking about in regards to Dercum's/my health. I ended up diagnosed by a geneticist who researched the symptoms and onset and said I matched up.

My condition is rapidly worsening, it hurts to type this even, my arms are on fire and new lumps cropping up past my elbows now in the last week or two. I only found my first rib lump a year and 4 months ago and now they are everywhere.

Anyway I digress, the reason I am responding is I have been looking consistently for any medical help to slow this down or reverse it or even control the pain without opiates which I have thus far refused and have found no one here in Vermont. In fact I reached out today and found that the rheumatologist listed says she is not familiar with Dercum's Disease. If you hear different from Libman's office please let me know! Or if you find someone at all frankly, please.

Thank you.
Lind

Gerilyn Stellema

3/22/2017 09:00:52 pm

Hello Dr. Herbst. I have had painful lumps all over my body for many years and have brought these to many doctors attention. My primary doc agreed to have a biopsy of a few of the painful lumps in 2011. These were lipomas I was told at the time "normal tissue" nothing to worry about, My health has progressively gotten worse since that biopsy. I have been diagnosed with hoshimotos, intercistial cystitis, chronic dry eye. I have protein c deficiency clotting disorder, high blood pressure, obstructive pulmonary desease, depression, anxiety, brain fog. I basically Feel pretty horrible most days. I have tried several diets. The most recent was a low carb, high protein diet, lost 43 lbs, but over the past 6 months have gained it back. I have been searching for something, a reason as to why I have all these problems. I finally found a link to your site and started reading. Finally I think I have a name for what is happening to me "Dercums desease" I printed some of this information and made an appointment with my primary who has seen the decline of my health, but had no answers. He read and totally agreed that it sounds like what I have. He said he would be willing to refer me wherever I should go for treatment, but other than you had no idea where to send me. I am located in Grand Rapids Michigan. Can you refer me to someone in Michigan or neighboring states or should I just make an appointment with your office and rob a bank to get the money to come see you. I am joking of course about the bank, but am really not in a financial situation to be able to afford the cost to go to Arizona. Although it seems that you are the only doctor I can see from my research that has a good knowledge of this desease. Please help me figure out what I should do. Thank you for your guidance.

Sherry Barber

6/30/2018 05:33:43 am

Dr. Herbst. My doctor thinks I have dercums disease. I called you office a few days ago. I would like to talk to you about the disease if at all possible.

Conor Gerrity

10/8/2018 11:45:40 am

Hey Dr. Herbst! I heard about your program and Arizona university (TREAT) I am 23 and I have had lipomas since I was 16. I’ve had a few removed but it seems like out of no where they are growing in numbers. I probably have close to 100 now. I was a heavy drinker but quit almost 2 years ago. And I have been focusing on cleaning my diet up and also trying keto. I am in pretty good shape, and don’t understand why my body is producing them. I know my dad, sister and brother have them to do it could be the familial lipoma thing. But there’s gotta be some underlying problem to cause a body to create tumors isn’t there? I’d love any advice, treatment, or news on experiments your working on! Some of these lumps hurt, but I’m really just scared of how I’m starting to look. Any help would be so appreciated!

Christine Keenan

11/30/2018 10:17:41 pm

Dr.Herbst, I was able to see you and get diagnosed in 2009 with lipo-lymphedema, lipedema and Dercums. The Dercums has become more prominent and is now on my ribs to an extreme. It has made me feel as I’m having a heart attack and now am beginning to have trouble breathing. Any advice on what to do would be great.
Thanks,
Christine Keenan.

mary jane

3/22/2019 07:21:41 pm

I want to share my experience on how I was cured and free from DERCUMS Disease . I was infected with DERCUMS disease and all my hands and leg where swollen and I was living in pain. I went to so many hospital but the doctor told me that there is no possible cure for DERCUMS disease but I was giving so many drugs but they never work. I saw a testimony on how Dr ABAKA herbal mixture has help In curing people from so many disease including lipedema and I decided to contact him if he could help and he told me that he is going to help me get cured I believed him because I have read so much about him. Finally I got his herbal medicine and I used it for just one week and I was finally cured from DERCUMS diseases and all my swollen body was normal. Thanks to Dr ABAKA for restoring my health. If you are suffering from any diseases of any kind you can reach out to him and he will cure you permanently get in touch with him through his email drabaka99@gmail.com or whatsapp +2348147054320. He also cure HPV, herpes, diabetes, enterovirus, Zika virus, hanta virus, and any type of viruses.

Julie Daniels

3/23/2019 07:48:02 am

I have had dercums for about 7 years now. It's from the top of my head down to my feet. I have a few areas that are worse with clusters of dercums than other places. Right now I'm dealing with a pinched nerve in my left arm and inflamation from heavy dercums in my arm shoulder and left back side. I don't know what the best medicines would be to help with a pinched nerve pain, that's what I call crazy pain is the pinched nerve. I'm using a topical inflammatory and and Tylenol and Advil. I have to choose between Advil and inflammatory prescription because I need help with pain. The doctor I saw yesterday wanted me to try the inflammatory cream instead of doing a prescription painkiller. And I don't go for the strongest ones. Can you give me any advice on what I could suggest to my doctor whenever I go back to see him as the one I went to see was not my regular doctor.

mira emma

4/10/2019 08:41:12 pm

suffering from HIV disease for over 4 years, i was hopeless until one of my friend directed me to a man called Dr Udi, she said he cures the sickness and also said he has also helped her friend, i never believed her but after alot of talk, i decided to give him a try, just few days ago i contacted him and he told me what to do which i did and he gave me a herbal cure which i took and then he told me to go for a test which i also did and when the result came out i was surprised to see that i am negative. I am proud to tell you the i am the most happiest person on earth I Give thanks to Dr Udi.. If you are having any problem and you need help, You can contact him with his email drudiherbalhome@gmail.com or Whatapp: +2348051243538. or you can visit his website:
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Lee Scheeler

11/22/2020 01:23:16 am

Male, 42, non obese, chemically resistant masses, DD 30+ extraction surgeries (each 4 location average since 2017 ~monthly) recently on North Carolina SSI Medicaid. Need a pain management solution and surgeon in western NC (Clay Co) My private doctor in Atlanta is clearly no longer available and nobody out here has heard of DD let alone treated anyone.

Local ER does NOT:
- give out opiates
- give lidocaine IV
- local anesthetic block lipomas
- even begin to put me with a surgeon

To boot it will be months before they can see me with a basic family doctor. Historically it takes 2-4mg dilaudid to get a few hours non agony. Neurological storms of pain literally lock my body down and the best the ER can do is a half dozen Tylenol 3.

HELP! Most days I can barely care for myself the pain is so bad despite lifestyle adjustment. Without regular extractions the pain is escalating to a deeper level of disability and dysfunction rapidly since being on state care.

Marisol

4/24/2022 11:56:29 am

Hello,

I'm self diagnosed Type 1 & 2 Dercums. I get them from top of head to bottom of feet. They're small and I keep them small by using a theragun for 6 hours a day as well as a massage cushion for back. The pain is excruciating, but the massage helps lessen the pain until they grow back again. I get flares of high inflammation every 2 months. My knots triple in numbers and I get some muscle weakness and fatigue as well as unstable joints. I find intermittent fasting for 20+ hours a day helps during flares and reduces inflammation and amount of knots. My growths aren't all round, some are tendon or rope like and connect wrapping around my joints and ribcage. My arms sometimes feel like they're going the wrong way when I bend at elbow. Once I use theragun I'm able to move more freely. I'm just posting this to give some suggestions for others, or if you have diffuse type of Dercums. I can't say for larger lipomas. It takes me about a week or 20+ hours to break down mid size lipomas and ropes. Sometimes several weeks. It is excruciating and if I get too swollen from massage I stop for awhile. They do eventually come back so it's very tiring, but it helps me keep my mobility for now. I'm female, obese, 41 years old and my symptoms started at 38. They worsened at age 39 to the point where I had extreme muscle weakness and could barely move for months and had to relearn walking. I'm diagnosed with spine herniation, tears, arthralgia, cartilage tears in joints, venous insufficiency (mild), myofascial pain.

I also have self diagnosed peripheral neuropathy and must keep legs elevated constantly because fluids pool in them. I've seen over 35 doctors and have been to physical therapy several times. I am a lot better than at 39. I can walk fast, go up stairs, work part time and do most activities except for any pulling, pushing movements, otherwise my limbs feel like ripping. It is a struggle, but I feel the massage gun has really helped as well as the intermittent fasting.

Let me know what you think or if you do something similar.

Destiny

3/6/2023 10:49:13 am

Hello I am a #7 year old female who has lived with chronic pain my entire life, as well as extreme fatigue. I had my first child at 28 and during that pregnancy my pain worsened I also gained 80 pounds without a signifigant increase in diet, it was during this time that symetrical lipomas (very painful) began to develop.
By the birth of my second child two and a half years later the lipomas were spreading and some required removal. I am now suffering with excercise and diet resistant painful fat, lipomas all over my thighs stomach e and now some in my chest back and arms, I have a history of extreme headache neck pain dizziness and syncope as well as unexplained seizure activity that cost me my drivers license. my life is slipping away and I feel lost. after 15 years of testing, gaslighting and so many dr.s I am still lost I have EDS and Fibromyalgia but that leaves unanswered questions, questions I hope you may know the answers to. I deeply appreciate any of your time and energy you can spare.-Destiny Laird

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3/10/2023 03:25:58 pm

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